ALS Advocacy

ALS Advocacy
Lou Gehrig's Disease - Motor Neuron Disease - Amyotrophic Lateral Sclerosis
Thought it had been cured by now? Still no known cause. Still no cure. Still quickly fatal. Still outrageous.

Wednesday, June 25, 2014

Dear New York Yankees, Major League Baseball, AT&T, The ALS Association,

I beg you, please stop!

On July 4, 1939, the image of a courageous, eloquent man bidding us farewell was frozen in time.

Because of the sensibilities of the era and a respect for celebrity privacy that we don't have today, we saw little of Lou Gehrig after that.  It's hard to visualize his out-of-control, downhilll journey to his death less than two years later.

Any baseball fan knows that he took himself out of the game.  We know that something was happening to his remarkable athletic ability.  We can stretch our imaginations to see him eventually not being able to use those powerful arms and legs, but unless you've seen ALS in person, you may not realize that it's more than arm and leg strength that are stolen by ALS.

Neck weakness is one of the most insidious parts of ALS.  It's hard to understand until you've seen it and tried to deal with it.  Your head is heavy.  If its center of gravity strays from directly over your shoulders, without neck strength, you are toast.  Your head flops painfully.  You can't pick it back up.  You can't see.  You can't breathe.

That handsome Yankee who still looked fit and strong in 1939 faced a difficult ALS path that hundreds of thousands have taken since.  It includes that evil neck weakness that few realize.

This is why the Lou Gehrig bobblehead promotions are offensive and disrespectful.

This is why we need to make the 75th anniversary of Lou Gehrig's farewell a moment when we all respect and honor a great Yankee and American, and at the same time respect all of those who have dealt with the disease that bears his name.

I cringe to think that 18,000 baseball fans could listen to Lou Gehrig's farewell while holding little statues with his head wobbling.  If that happens, we will have lost our way.

I beg of some of the most trusted brands in the world.  You know how to lead.  You know that doing the right thing is important.  Please do the right thing.

Thank you.


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Saturday, June 21, 2014

What We Can Learn From A Tale of Two Airport Shuttles

A few years ago I had a business trip to a major American city that has an airport far from downtown.  The meeting I was attending suggested a specific airport shuttle service to downtown hotels.  I followed the suggestion and to this day have bad memories of that shuttle ride.  We had long waits, an inexplicable change to a different van before we even left the airport, and uncommunicative driver who seemed to be driving in some odd directions.  Each passenger was glad to exit an unpleasant and long shuttle experience.

Last week I returned to the same city.  A few things were different this time around.

I was able to do my homework.  I knew to check online reviews of shuttle services.  Sure, price is important, but so are my time and safety.  I made a more informed decision than before.

I booked the trip online and that started a reassuring information connection with the shuttle company.

The minute I turned on my phone as my flight taxied to the gate, I had a message giving me directions to baggage claim and the shuttle.  After I picked up my bag, I received another message with a van number and an estimated number of minutes until I would be picked up.  Everything seemed to move faster since I knew what was going on.  And I didn't feel forgotten or misplaced.  I boarded my van, it made a couple more pick-ups at the airport, and we were on our way.

I looked at my phone's map app and saw a 28-minute eta to the downtown area.  Good.  And I could
see that the driver was taking the freeway route.  About halfway through the trip, there was a large traffic backup ahead.  The driver bailed onto an open exit.  Ut, oh.  Here we go.  My map was able to show me where we were going, I learned a few things about local geography and landmarks, and we eventually met back up with the main route.  And as passengers were dropped off downtown, I could see the locations of the hotels and was not puzzled over the driver's sense of direction.

There was such a difference in shuttle experiences, but why?  The trips themselves were not all that different, and there were snags in each.  The difference was information.  I felt that I made a more informed decision, and using the shuttle's technology and my own tools, I knew what was going on every step of the way.

When will we equip people with ALS with the information and the tools that they need to make informed clinical trial decisions and to know what is going on every step of the way?


Friday, June 13, 2014

No, Everything Is Not Fine

The concerns about the Lou Gehrig bobbleheads have been around for years.  ALS neck weakness is one of the most difficult parts of this stinking disease.

In this, a special year to remember Lou and to educate people about ALS, it's time to address the problem seriously.

A few weeks ago on the ALS forum at www.patientslikeme.com, a woman with ALS posted her comments about a fundraising message she had just received promoting a Lou Gehrig bobblehead as a premium.  She was shocked.  Her final words in the posting were, "Does it come with a neck brace?"  More patients spoke up. No response.

Then on the ALS Association of Greater New York facebook wall where the fundraising promotion was posted, a number of people spoke up, too.  No response.

Then on Jonathan Eig's facebook wall and twitter feed, he asked a thoughtful question about these bobbleheads being offensive.  Good discourse.  Not 100 percent agreement, but the overwhelming sentiment among those who have dealt with ALS is that these are offensive.

And during this whole time this blog site has had an interesting array of daily traffic watching the postings regarding the bobbleheads.  Isn't anyone going to take some constructive action?

Everything is not fine.  Those who who hold the responsibility to stop the promotion of these little statues need to step up, but first they need to take off the sound-deadening earmuffs and listen.

Please bury the bobbleheads.  You know they are simply wrong.  You know that this is an opportunity to educate people about ALS and about what happens to people like Lou Gehrig after they say their courageous farewells.

I don't know what Eleanor Gehrig would say, but I had a loved one who struggled terribly with ALS neck weakness.  Imagine your heavy head resting down on your chest and your neck being completely powerless.  That's ALS.  That's why these trinkets are wrong.  Then again, perhaps I do have an idea of what Eleanor Gehrig would say.

No, everything is not fine right now. Thanks for listening.






Thursday, June 12, 2014

What We Have Here Is A Failure To Communicate

The April 1 CMS-Medicare rules for Speech Generating Devices are simply in a time warp relative to today's technologies and the needs of people with ALS.

Now we understand that on September 1 there will be another giant step back to the 1970s --


Effective September 1, 2014, if a person's SGD has the potential for any function other than speaking (for example, email), then Medicare will not pay for the person's ability to speak through an SGD.

The people who write these rules must save them on computers with floppies that really flop while they listen to John Denver's Greatest Hits on their 8-track players.

People live with ALS in the real world of 2014 are unable to communicate without the enabling (and relatively inexpensive) technology of 2014.  To deny them that is wrong.

Maybe we should have an "rap with your kids about technology" day for the rulemakers at CMS.  Way cool.




Tuesday, June 3, 2014

Please Bury The Bobbleheads

Please stop all the promotions now.

Please educate.

Please explain why a Lou Gehrig bobblehead is an offensive and disrespectful trinket.

Please (literally) bury the inventory.

Enough is enough.